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The main purpose of the Study is to develop an understanding over time and through multiple research projects, including surveys, interviews, online focus groups, and other primary research methodologies (A-LIST Research Projects) on what matters most to individuals concerned about brain health and those with and/or affected by Alzheimer's disease and other dementias, including caregivers.
To do this, UsAgainstAlzheimer's will identify and engage individuals who want to focus on brain health; individuals who are worried about their cognition; individuals who perceive themselves to be at risk for Alzheimer's disease (AD); individuals who may be at risk for AD due to self-identified confirmation of underlying disease pathology; individuals who self-identify as having a diagnosis of mild cognitive impairment (MCI) or of AD or another dementia; and those who self-identify as current or former caregivers of patients with Alzheimer's disease or another dementia to participate in the A-LIST Research Projects. Such participants will either already be - or will be invited to become - members of the A-LIST cohort, an online cohort of individuals ready and willing to engage in A-LIST WMM Insights Series (A-LIST members).
The A-LIST WMM Insights Series will enlist participants to offer insights into a range of issues relevant to Alzheimer's, including as examples issues pertinent to clinical trial design, regulatory submissions, other research strategies, payer value determinations, and care and services research. The A-LIST WMM Insights Series may seek information that in some instances will be marketing research or other research exempt from IRB oversight. However, when an individual A-LIST Research Project constitutes human subjects research consistent with governing law, IRB approval will be sought and obtained. Where questions exist whether an individual A-LIST Research Project constitutes human subject research, IRB determination will be solicited.
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| Measure | Description | Time Frame |
|---|---|---|
| Phenotypical Characteristics of Patients and Caregivers | Online monthly surveys capture the burden and unmet needs for patients and caregivers of individuals with or at risk for Alzheimer's disease, other dementias, and mild cognitive impairment; also recruiting individuals interested in brain health. | 3 years |
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Inclusion Criteria:
To be eligible to participate in the Study, an individual must meet all of the following criteria:
Exclusion Criteria:
An individual who meets any of the following criteria will be excluded from participation in this Study:
1. Unable to comply with the Study requirements.
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Individuals who want to focus on brain health; individuals who are worried about their cognition; individuals who perceive themselves to be at risk for Alzheimer's disease (AD); individuals who may be at risk for due to self-identified confirmation of underlying disease pathology; individuals who self-identify as having a diagnosis of mild cognitive impairment (MCI) or of AD or another dementia; and those who self-identify as current or former caregivers of patients with Alzheimer's disease or another dementia.
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Virginia Biggar, BA | Contact | 3014521123 | vbiggar@usagainstalzheimers.org | |
| Theresa Frangiosa, MBA | Contact | 908-872-5815 | tfrangiosa@usagainstalzheimers.org |
| Name | Affiliation | Role |
|---|---|---|
| Theresa Frangiosa, MBA | UsAgainstAlzheimer's | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| UsAgainstAlzheimer's | Recruiting | Washington D.C. | District of Columbia | 20043 | United States |
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| Label | URL |
|---|---|
| Join UsAgainstAlzheimer's A-LIST | View source |
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| ID | Term |
|---|---|
| D000544 | Alzheimer Disease |
| D003704 | Dementia |
| D060825 | Cognitive Dysfunction |
| ID | Term |
|---|---|
| D001927 | Brain Diseases |
| D002493 | Central Nervous System Diseases |
| D009422 | Nervous System Diseases |
| D024801 | Tauopathies |
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| D019636 |
| Neurodegenerative Diseases |
| D019965 | Neurocognitive Disorders |
| D001523 | Mental Disorders |
| D003072 | Cognition Disorders |